Minutes: Proceedings of September 6, 2007

Executive Director Sally Atwater welcomed the Committee members and guests to the quarterly meeting of the President’s Committee for People with Intellectual Disabilities. She recognized and thanked the PCPID staff and made some general housekeeping announcements. Ms. Atwater then turned the meeting over to Committee Chairman, Rob Sweezy.

Mr. Sweezy also thanked the PCPID staff for their work to develop the 2007 PCPID report to the President, and for completing planning activities for the Quarterly Meeting. Committee members approved the agenda and introduced themselves.

Mr. Sweezy introduced Mr. Daniel Gade, Associate Director for Domestic Policy at the White House. Mr. Gade gave a brief personal introduction and highlighted some of his professional duties with the Department of Defense and the White House emphasizing his commitment to people with disabilities and emergency preparedness, education and employment. He gave a brief overview of the New Freedom Initiative and discussed the progress that had been made in moving people from institutions to home-based services, as well as in emergency preparedness; particularly, in the wake of hurricane Katrina and the lessons learned from the experience. Mr. Gade then introduced a new exercise entitled Top Officials Four (TopOp4) that will evaluate how different agencies are able to help people (including people with different types of disabilities) evacuate in an emergency situation.

Mr. Gade examined the Ticket to Work program and noted that while it is, conceptually, a great program, disappointing participation rates have illustrated that more work remains to be done. He discussed the sizable labor pool that people with disabilities represent and noted that employers harbor some irrational fears about the impact that hiring a person with a disability may have on their business. He expressed his belief that the Federal Government should increase its involvement in hiring, training and locating jobs for people with disabilities. Mr. Gade also stressed the President’s commitment to people with disabilities.

Mr. Gade discussed soldiers returning from the war in Iraq with acquired cognitive disabilities. He noted that just as amputation was the “signature” injury during the Vietnam War, so was Traumatic Brain Injury (TBI) for the War in Iraq and Afghanistan. He commented that while the rise in traumatic brain injuries presented specific problems, it also demonstrated the increased survival rate among wounded soldiers when compared to past conflicts. Mr. Gade attributed the rise in survival rates in part to the superb critical care in the field medical care facilities, including neurosurgery. Mr. Gade noted the government’s response to the rise in traumatic brain injury, stating that the Department of Defense and the Department of Veterans Affairs have several initiatives to address the needs of veterans returning with traumatic brain injury including pre and post deployment mental health screenings, the Senior Oversight Council, the Defense and Veterans Brain Injury Center and the Center of Excellence for Psychological Health and Traumatic Brain Injury.

Mr. Gade concluded his remarks and responded the questions from the Committee. There was an extensive discussion regarding Segways as mobility devices and the barriers that people with disabilities continue to face while using innovative technologies to improve their quality of life. There was also a discussion regarding definitions of intellectual and cognitive disabilities and how they differ from agency to agency and state to state.

Mr. Sweezy introduced the next presenter, Jean Moody-Williams, Director of Quality Evaluation and Health Outcomes at the Centers for Medicare and Medicaid Services (CMS).

Ms. Moody-Williams began with a brief overview of CMS and how it fits into the broader context of the Department of Health and Human Services. She provided a brief explanation of the Deficit Reduction Act and how CMS programs responded to this legislation. She also explained CMS efforts to find new methods to provide interoperable health information technology to better coordinate health records, and ensure that it is safe and secure. She discussed measuring and publishing quality of care information to help consumers make informed decisions about their health care. Ms. Moody-Williams noted the importance of understanding that Medicaid is run by the states with only broad Federal guidelines and therefore, the states are primarily responsible for determining where and how to use Medicaid funds.

Ms. Moody-Williams then turned the discussion to Early and Periodic Screening, Diagnostic and Treatment Services (EPSDT) and noted that it is not a program, but a service offered under Medicaid. She also noted that each state provides these services, but that they may not necessarily be known as EPSDT. She then turned the discussion over to her colleague, Cindy Ruff.

Ms. Ruff reviewed the basic rules for Medicaid eligibility noting that the criteria are primarily financial, but that certain populations and groups may also qualify based on other criteria. She also noted that states primarily set the amount, duration and scope of the services provided, but must abide by some basic Federal regulations. Ms. Ruff highlighted the difference between mandatory and optional services and noted that EPSDT is a mandatory service available to the categorically needy and available to most individuals under the age of 21.

Ms. Ruff explained rules, regulations and services of EPSDT provided by Medicaid. She particularly noted the exception to comparability for those who qualify for EPSDT services compared to others enrolled in Medicaid. She then took questions from the Committee which included further discussion of state-by-state eligibility, emergency preparedness, Medicaid services crossing state lines in the event of emergency evacuations, and improved dental care.

Chairman Sweezy called on Committee member Stephen Suroviec to introduce the next panel. Mr. Suroviec first introduced David Keer, Co-Chair of the Interagency Subcommittee on Disability Statistics.

Mr. Keer began by noting that when looking for disability statistics, it is always important to pay close attention to the definition of disability used to define the survey, the source of the data (Federal government, state government, and private sector), the year in which the data was produced, and the purpose of the data collection. He discussed the different Federal surveys that collect information on disabilities, including the National Health Interview Survey, the American Community Survey, and the Census. He also highlighted other Federal data sources, including program and administrative data (such as data collected by the Department of Education).

Mr. Keer discussed the commonalities among many of the data sets, such as physical and mental functioning levels, and the importance of what questions are being asked and of whom (individual, caregiver, and family member). He noted that not only is there a lack of data in some areas, but there are also existing data sets that have yet to be mined for information relevant to people with intellectual disabilities. He pointed to the National Health Interview Survey on Disability as being the “gold standard” of intellectual disability estimates, but noted that the survey was 13 years old.

Mr. Keer stressed the need for more data, but emphasized that in the current constrained funding environment the focus needs to be on maintaining the current level of already available resources. He also stressed the need for a new National Health Interview Survey on Disability.

Mr. Keer then responded to questions from the Committee.

Mr. Suroviec introduced the next speaker, Michael Rand, Chief of Victimization Statistics in the Bureau of Justice Statistics at the U.S. Department of Justice.

Mr. Rand began with an explanation of the Crime Victims with Disabilities Awareness Act. He discussed some of the procedures and challenges associated with collecting statistics on crime victims with disabilities. He also noted that there are two main measures of crime, both conducted by the Census Bureau through telephone and personal interviews, but he also noted that they are beginning to transition to a computer assisted interviewing method. Mr. Rand highlighted some of the interviewing techniques and procedures, noting that in about one percent of the cases a proxy was used, primarily for people with cognitive and hearing disabilities. He also noted that the current models neither include institutional settings, nor are they disability specific.

Mr. Rand discussed funding issues, noting that data collection under the Crime Victims with Disabilities Awareness Act is largely an unfunded mandate and that this affected the number of questions that could be added to the incidence report. He also discussed some of the initial setbacks in trying to collect the data, in particular from people with intellectual disabilities who could not complete the long and complicated survey forms. He emphasized that even with successful completion of the forms, the numbers cannot tell the whole story as there is no denominator for the purposes of comparison to the larger population of people with disabilities.

Finally, Mr. Rand discussed the automation process and the anticipated release of new, more meaningful estimates in 2008. He then took questions from the Committee members. An extensive discussion ensued regarding people with disabilities living in institutionalized settings, and both Mr. Rand and Mr. Keer confirmed that most national surveys do not include people living in institutions. Sharon Stern of the Census Bureau noted that whether or not people living in group homes were included depended largely on how the interviewer classified the residence. There was also a discussion of using a reliability scale in development of the survey questions and Mr. Rand noted that they had not been able to bring the survey questions down to a level that would be more appropriate for people with intellectual disabilities.

Dr. Van Naarden Braun presented the two main surveillance projects related to people with intellectual disabilities—the National Health Interview Survey and the population-based systematic record review. The national survey data are collected through personal interviews and self-completed questionnaires while the systematic record review data are collected by reviewing existing records. She discussed the 1994 national survey disability supplement and the State and Local Area Integrated Telephone (SLAIT) survey which focuses on children to age 18 with special health care needs.

Dr. Van Naarden Braun presented several charts and graphs of disability data and reviewed the strengths and weaknesses of the various instruments used to gather disability data.

Dr. Van Naarden Braun explained her current project in metropolitan Atlanta, Georgia, including the purpose, goals, methodology and scope of the project. She explained that their primary source of information for the project was state special education records, but that they also use records from the Georgia Department of Human Services, as well as private medical providers and clinics. She discussed the challenges associated with getting scientifically sound data, the project’s findings to date and the additional information that can be gather by linking to information from other entities (such as the Emory University Pediatric Genetics Clinic).

Dr. Van Naarden Braun took questions from the Committee members.

Mr. Suroviec introduced the next speaker, Joe Razes, Technical Advisor for the Centers on Medicare and Medicaid (CMS).

Mr. Razes began with a brief overview of Medicare and Medicaid. He noted that he would discuss five sources of data within the agency. He first discussed the Medicare Beneficiary Survey—a combination of interview and systematic records review aimed at gathering information regarding the health status, health care use, health care coverage and associated demographic characteristics of the beneficiaries. He noted, at this point, that the definition of disability used by CMS comes from Title II.

Mr. Razes discussed the second data source, the Chronic Condition Data Warehouse. While the general categories for disabilities in the warehouse are very broad, he noted that it is possible to separate people with intellectual disabilities from the broader categories. The warehouse stores beneficiary claims and assessment data (the services used and the resulting health status).

Mr. Razes then addressed the third data source—the Medicaid Analytic Extract (MAX)—an abstract of Medicaid claims data. The fourth data source—the Medicaid Long Term Care Data Chart Book—provides more specific information regarding individuals receiving waiver services under Medicaid. He noted that the fifth data source is from the Ticket to Work program.

Mr. Razes highlighted the Research Data Assistance Center, a CMS contractor from the University of Minnesota that provides technical assistance to anyone interested in using CMS data.

Mr. Razes then answered questions from Committee members.

Mr. Suroviec introduced the final speaker on the panel, Sharon Stern, Chief of the Poverty and Health Statistics Branch at the US Census Bureau.

Ms. Stern began with a brief overview of how the Census Bureau prepares for a census, including question selection and testing. She discussed the transition from the long form census to the American Community Survey—a continuous survey that produces specific geographic and demographic information, released on a five year basis. She pointed out the disability-related questions on the American Community Survey handout noting that the questions had all done very well in reliability testing.

Ms. Stern discussed the Income and Program Participation Survey which uses multiple interviews over several years to collect detailed data about economic circumstances, income sources, education, employment and health. She noted that one topical module focused on adult and child functional limitations.

Ms. Stern answered questions from the Committee.

Chairman Sweezy announced a refreshment break./p>

Following the refreshment break, PCPID Executive Director, Sally Atwater called the meeting back to order and introduced Bob Goldstraw, Project Manager DisabiltyInfo.gov., US Department of Labor (DOL), Office of Disability Employment Policy (ODEP).

He shared an update on the status of the Committee’s suggestions from the previous meeting and invited them to continue providing feedback. Mr. Goldstraw reviewed some of DisabilityInfo.gov’s current projects—particularly as they related to people with intellectual disabilities—and provided a demonstration. He noted that two of the goals for the upcoming fiscal year were providing the information on the site in plain language and improving the search engine.

Mr. Goldstraw introduced Loretta Harrington to discuss the Department of Labor’s efforts to increase public awareness of DisabilityInfo.gov.

Ms. Harrington described DOL outreach efforts to Congress and highlighted several upcoming events—including the release of a promotional video—to increase awareness of DisabilityInfo.gov. She also noted plans to host a policy summit in 2008 (sponsored by ODEP) to showcase five years of research in various disability fields.

Mr. Goldstraw and Ms. Harrington answered questions from the Committee and there was a discussion of accessibility technology and more specific and forgiving search engines.

Chairman Sweezy then transitioned the meeting to a discussion of the 2007 Report to the President. The Committee discussed the format of the document and how best to present the recommendations throughout the report. The Committee agreed to split into subcommittees to edit the length of the Executive Summary and list of recommendations from their respective subcommittees.

Committee member Billy Edwards and Ollie Cantos of the Justice Department briefly addressed the Committee regarding the criminal justice section of the report. Mr. Cantos commended the Committee for their dedication to the issue of people with intellectual disabilities in the criminal justice system.

Chairman Sweezy announced recess of the full Committee session and members were asked to meet with their respective subcommittees.

Minutes: Proceedings of September 7, 2007

Sally Atwater called the meeting to order and asked Committee member James Boles to present the next speaker.

Dr. Boles introduced Naomi Miske, Associate Counsel for Ethics Education and Program Review, Ethics Division of the Office of General Counsel, Department of Health and Human Services.

Ms. Atwater presented Committee member Sharman Word Dennis who introduced the next speaker, Stephen Hollingshead, ex officio representative from the Department of Housing and Urban Development (HUD), who serves as Senior Advisor to the Secretary.

Mr. Hollingshead emphasized that his remarks were his own, and in no way reflected the views of the Administration. He gave an overview of American political philosophy, highlighting the importance of opposing interests. He discussed the separation of powers (Federalism) and stated his belief that America’s true founding document is the Declaration of Independence.

Mr. Hollingshead discussed natural rights that exist apart from the state. He noted the founders’ choice to establish a republic over a democracy so that the majority could never oppress the minority, and expressed belief that while we have not always lived up to this ideal, we must continue to strive for the promise of it.

Mr. Hollingshead reviewed the structure of the United States government and emphasized the importance of states’ rights. He stated that while government may seem to move slowly, it was designed to operate that way in order to guard against tyranny by one person or group. In conclusion, he emphasized that the Committee should be wary of the temptation to dictate to states and localities which policies they must implement.

The Committee then engaged in a discussion of Mr. Hollingshead's remarks, including a discussion of the Olmstead decision.

Chairman Sweezy requested the Committee members break into subcommittees to finalize their statements for the Executive Summary of the Report to the President. Following the subcommittee work group sessions, Committee members reconvened for more discussion of 2007 the Report to the President.

Chairman Sweezy asked each subcommittee chairman to present his/her revised paragraphs for inclusion in the Executive Summary. After discussing the revised statements the Committee, staff discussed the process and procedure for completing the report and sending it to each Committee member for official vote by ballot to approve delivery of the document to the Secretary of HHS for transmittal to the President. The Committee members expressed their desire to wait until receiving the final version of the report before casting their vote for approval.

The Committee then turned its attention to potential topics for the 2008 Report to the President, including translational research, dental care, and employment. Committee member Neil Romano noted that he would like to see the theme of the value of people with intellectual disabilities continued in the 2008 report. An extensive discussion of employment and potential subtopics ensued and Ms. Atwater suggested the possibility of holding a roundtable to obtain data on employment which could then serve as the basis for the 2008 report.